Trying to understand hospice timing for advanced Parkinson’s/dementia
Hi everyone, I’m trying to better understand when hospice becomes appropriate for someone with advanced Parkinson’s and dementia. My dad is currently in a nursing home and his dementia is pretty advanced. He is in a wheelchair, but many days he can’t really be gotten out of bed because when he’s in the chair, he is slumped over and can’t hold himself up well. He is incontinent and needs full care.
He can still be fed pureed food by the staff, but some days he can’t manage that and they have to give him a liquid diet. He drools a lot now because swallowing seems to be getting harder. His voice is very soft and quiet, and it’s hard to understand him. He does still recognize family, but most of what he says doesn’t make sense anymore.
Medically, a lot of his labs come back normal. He takes blood pressure medication and thyroid medication, and he has issues with frequent UTIs. He also has had high ammonia levels related to constipation, but he is on medication for that.
I keep read that hospice is for people expected to have six months or less to live, but I’m confused about how anyone can really predict that, especially with something like Parkinson’s/dementia where the decline can be slow but still severe.
For those who have been through this with a loved one:
At what point did they qualify for hospice?
What questions should I be asking the nursing home, his doctor, or a hospice provider?
We’re not necessarily trying to rush into anything, but his quality of life is very poor and I want to understand what options exist and what the process actually looks like. I’m planning to talk to people in person too, but I’d like to be more prepared before those conversations. Thank you to anyone willing to share your experience.